29 May 2013

I sleep in the dining room:

I came home from the hospital to discover my bed in the dining room. The table and chairs had been moved out and my bed had taken their place. I, in my debilitated state, am not allowed to walk up and down stairs multiple times a day. My location in the dining room saves me the energy of tackling the stairs and means inclusion in family happenings. My bedroom upstairs would have felt like the isolation cabin on The Parent Trap, only without a newly discovered twin sister. I convinced them to move my bed a bit farther into the family room, so I can see the TV properly. But now, I have everything I need. (Kitchen is close too).
My parents-- maybe I should just say mom because it was her idea--are indeed thoughtful. Also, my mom has arthritis, so tackling the stairs multiple times a day to care for me would have been dully as painful. You know, now that I think about it, it may be that the plan was always more about my mom's joints and less about my comfort. Well whatever. Either way, I am still sleeping in the dining room.


21 May 2013

Home Sweet Home:

I'm home! Today, I was sent home with a goodie bag of six different prescriptions, including a nasty shot I have to administer into my own stomach every night for the next three weeks. However, I am happy and healthy and home! More later.

20 May 2013

False Alarm:

Lesson number 1: Do not believe everything you read on facebook.

Lesson number 2: Do not believe everything you hear from your doctors.

I was all ready to be leave, bag packed, bed made, sweater on. Mom was assigned to come get me at noon. At 10AM, I got my discharge papers: a thick packet with all my at-home care instructions and a hefty stack of prescriptions. I posted the news on facebook. Only 12 days and I'm out of here! At 11AM, I threw up. Another setback. The doctors came and went, and then came and went again. A typical reaction after a major surgery on the digestive tract, they said. But yet, another delay. They said that they greatly encourage me to stay one more night to monitor the functioning of my bowels. Glamorous, I know.

Well on the bright side, I get this beautiful view for at least one more night. No joke, this is the view of the Williamette River and east Portland from my hospital room. I took this picture on my phone... no filter or editing.

19 May 2013

Day Eleven and the Outdoors:

Today, I feel like myself again. This morning, I was detached from the IV. Today, I am taking all my pain pills by mouth. Tomorrow, I am going home.

Today, Dad and I ventured outside. First time outside in eleven days. It's a typical, cloudy Portland day, but the view from the hospital terrace is still beautiful. And I feel beautiful because I had my first shower yesterday.

All in all, things are going well. However, after walking up a flight of stairs and all the way outside, I was exhausted. Frustratingly, I still have a ways to go to recover. But that recovery can be accomplished at home where there is netflix and real clothing. So life is good.

18 May 2013

The Rocky Road to Recovery:

Oh man, "The Rocky Road to Recovery," sounds like the title of a poor-selling self-help book for addicts. Well despite the utterly syrupy nature of my post title today, it's true. One day is smooth sailing and you're owning the oncology ward and the next, you're keeled over in the fetal position in excruciating pain.

That was yesterday. Yesterday's goal was to start managing my pain orally so I can eventually go home. Thus, they stopped the epidural and gave me two doses of oxytocin, two doses of tylenol codeine, and a dose of dilaudid; they did nothing. The pain began to cascade over me as the epidural wore off. I literally thought I was going to die. Never, never have I been in so much pain. I was throwing up; I was crying; I wanted to die. It was not pretty.

Finally, five agonizing hours and three doses later, they ditched the oral pain medication route and put me on IV narcotics with a pain button. It's still a step in the right direction. The goal was to get off the epidural, and I did. I can move without crying, so that's improvement. And I slept through the night and woke up with very little pain--thank you to a continuous flow of dilauded, a personal pain button, and priesthood blessing from Daddy and Jim. I feel great.

However, this means that I'm not ready to go home as soon as hoped. I need more time to heal before I can handle only oral medications. Looks like OHSU will be my home for a few more days.

16 May 2013

Let's get technical:

The pathology report is in! Just saw my doctors and received the news.

To begin, and before I get technical, here's quick overview:

Last week, I had a benign tumor removed from my pancreas via an extremely invasive operation. (See Whipple Procedure on Wikipedia.) This surgery was a precaution from the beginning. The tumor was not cancerous, but it risked malignant development; thus, it was better to take care of it now than to risk deadly repercussions when I'm 55. Think Angelina Jolie and her double mastectomy.

Furthermore, despite the tumor's aspirations of cancer, there was another risk. My tumor is a pseudo papillary something or other and it is found most commonly in women, ages 18-35. Oh hey, that's me. It's extremely rare. And usually it isn't caught until it either turns to cancer, or grows so massively in your abdomen that it cuts off important organs. It can grow as big as a tennis ball and then make little baby tennis balls in other organs. Thus, blocking other organs. But my tumor was very small. So small it never showed up on an MRI, just CTs and ultrasounds.

And this was the paradox. Was the risks of the tumor worth the risk of the surgery? This surgery was to prevent something bad from happening some time. I struggled for a long time on making my decision. Doctors had different views. I read too many scary articles on the internet. And it was so small. However, there was finally a consensus. It had to come out. The risk was too high. Surgery was inevitable. However, I could continue to monitor the tumor and then plan surgery years down the road or I could have the surgery now and never have to worry about it again.

In January, I scheduled my surgery for May. I thought it best to have my surgery when I could take off school and when I had no other responsibilities (career, family, paying for my own insurance, etc.) Although, I was still hesitant. The tumor could just disappear and never amount to anything. My surgeon told me that. He also told me that if I didn't want to have surgery, I could always call it off as soon as the day before. A huge part of of me wanted to pull a Julia Roberts in Runaway Bride and back out of everything. Go back to Provo, finish my degree, and live happily ever after. But another, bigger part of me, knew the surgery was right path.

Well, the object of this post was to tell you that I made the right choice.

And this is the part when I'm going to get technical. Pathology reports reaffirmed that it was indeed a pseudo papillary thingy and then it had started a peri-neuronal invasion (check my spelling there). Basically the tumor was starting to creep down into the nerves. Once in the nervous system, the fluids could have traveled anywhere in my body to birth seven tumor babies, starting with Liesel. Also, this nerve invasion would have been near impossible to detect from outside scans. So the surgery was absolutely necessary and more time sensitive than anyone thought! Well, Georg is gone, along with half of my pancreas, the duodenum, and my gall bladder. That's what happens when Georg places himself in the most inconvenient spot, near the bile duct in the head of the pancreas, everything has to be rearranged and removed down there in order to not slice the bile duct. (Again, refer to Wikipedia and Whipple Procedure, if curious.)

So that's where we're at. This is day seven in the hospital. It's been exactly a week. I hurt, I can barely walk, I can't shower, I have an epidural in my back, I get poked for blood tests five times a day, I haven't been outside in over a week, but I feel loved by my family, my friends, and my god. I hate to sound like a Mormon Mommy blogger, but here it is: I am blessed.

Anyone else's brain jump to Olivia Newton-John when I said "let's get technical?" No? Just me? Well, I am here to fuse that connection in your brain forevermore. You're welcome.

Speed Racer:

Three times a day, I'm supposed to get out of bed, don a one-size-fits-all hospital robe, unplug my IV cart from the wall, and take a little walk down the hall. Well, less of a walk and more of a very slow shuffle. Good news is, I'm going farther every day! And everyone compliments me on my cat slippers--given, they're adorable.

However today, Dad and I had a small adventure. We walked all the way to the elevators and took a trip to another floor! It was monumental.

I'm getting faster too. I'm nearly speed racing down the hallway, pushing that beeping and buzzing cart in front of me. You know, I'm so good that I think it's time to challenge room 8 to a race tonight. The fact that he fought against Nazis during the second world war doesn't scare me. My stumpy legs can take him.

15 May 2013

Day Six Debrief:

Yesterday was tough.
I woke up with sharp pains on the right side and little aid from the pain team.
I threw up.
I was dizzy, nauseous, and grumpy.
Last night, I had a fever of 103.
Despite, the number of people who bustled in and out of my room at 1AM to poke, prod, scan, and collect samples, they still don't know why.
Worst case: infection, but unlikely.
Today is better.
My fever is gone.
The water weight is starting to come off.
New anti-nauseous medication is actually helping.
I feel less pain.
I feel stronger.
I feel more motivated.

13 May 2013

Orchids from Georg:

I received these lovely flowers today, anonymously. The note just said, "Don't cry because I'm gone. - Georg." Very cute, I laughed pretty hard and then had to press my pain button as a result.

This is me publicly saying thank you to whomever. Much appreciated.

Love,
Debbie

12 May 2013

Whipple Surgery update:

Hey team, I'm in the ICU for my third day. The days are long, but I am on the mend! Still no food or water, but I walked 100 feet today. That's right, be impressed. Looks like the cat charity will have to wait another 50 years, because this girl is recovering. I hope to move to the surgical ward today. I've had enough of the million tubes I have coming in and out of my body. The ICU is a frightful pain and impeccably dull. Can't wait to get out.
Think of me and love to all.